High or Fluctuating Chromogranin A Level: What does it mean?

Hello @dbmenger

It has been a while since you last posted. How are the IBS symptoms? Has the UTI been resolved?

Hello @microbe1943

I'm sure you feel concerned! Between the symptoms you've experienced and the high CGA level it is understandable. However, I would urge you to breathe deeply and give yourself a rest from thinking of the worst case scenario. I know this is easier said than done but as you know there are other factors that can contribute to a high CGA.

Since you have a PET/CT scan scheduled, I encourage you to wait for the results and give yourself a break from thinking about this. Do you have a good support group in place? If so, reach out and see if you can make plans to get together and have lunch or see a movie. Whatever you can do for some rest and relaxation is important during this waiting period.

Do you have someone you can call?

I am being evaluated for a host of symptoms...including flushing, spiking BP that is episodic, fast heart rate, GI distess in small bowel and lower bowel. I had stage VI metastatic pancreatic cancer 6 years ago. After treatment I have been totally in remission! Miracle. These newish symptoms came on maybe 6 months ago. My Chromogranin A is 5727! Yes, I take PPIs and yes I have chronic kidney disease (moderate); I have diabetes treated with insulin. I am going to get a PET/CT dototate (gallium I think) Feb 9 I just did the 24 hour 5 HIAA urine yesterday. Anyone have any thoughts on the outrageous hgh CGA? i also have Polymyalgia rheumatica new since july. I take 10 mg prednisone daily since then. Thanks for any input out there! Sharon

Oh, dbmenger, this sounds terribly discouraging. Have you got medication to help clear the UTI and yeast infection? Do they further upset the digestive system?

My latest chromosome test was 493 (!). Right now I’m also dealing with IBS, a UTI and a yeast infection. This is truly discouraging.

My symptoms have lessened with a restricted diet-low histamine diet & gluten-free. Also, I continue to use the DAO (diamone oxidase supplement) since my body lacks this enzyme. I am scheduled for another Chromogranin A test; recently had an SIBO test( results pending). I am feeling better with GI supplements I take daily per my homeopathic doctor. I have portal hypertension as well so my GI system has been compromised for some time. I will probably have to remain on this low histamine diet/blockers indefinitely due to my PHT; further complicates my food tolerance issue. My doctors will continue to test my Chromogranin A levels; my new routine bloodwork. Most of all, I am learning to keep my stress levels down. The PET scan process alone was an extremely stressful & worrisome process not only for me, but for my family as well. Staying active definitely helps me remain more positive & in a better mindset. Best to you & your health.

I'm glad to hear that you are feeling better @tracyfurtiscaudle. I hope that your blood work shows an improvement in the Chromogranin A levels.

I would enjoy hearing from you. Will you post an update?

Yes. I am seeing a homeopathic doctor still. Detoxification of my GI Organs; as well as helping me reduce my PPI intake. (Proton pump inhibitors/nexium). I am scheduled for another Chromogranin A blood test in a couple of weeks; I should have in September but needed some downtime from the medical scene.
I have not been back to the oncologist; depends on upcoming bloodwork. My PET scan was w/in normal limits, but my GI doc says I will be further monitored.
I am truly saddened to hear about your medical diagnosis.
Please let me know if I can be of any further help.

Hi @tracyfurtiscaudle

In August you posted about your high Chromogranin A level and you were trying different treatments. I hope you are feeling better.

I would enjoy hearing from you. Could you post an update?

I am currently taking a histamine blocker for my facial flushing & GI issues. The high Chromogranin A level may be as a result of my almost 20 year PPI for Portal hypertension. Moreover I received Reclast infusion in Dec 2020 & it seems as though these symptoms became more acute after infusion. I am also taking hydrolysate collagen which seems to help with GI issues. Thank you for sharing your information/medical PET scan experience. I plan to revisit the high Chromogranin A issue within the upcoming weeks. I needed a breather…going on since Jan 2021. I am seeing my immunologist again to rule out some chemical allergies. I have seen an oncologist: recommended possibly a bone marrow test. Large University Hospital I recently visited recommended (for now) limit PPI’s & retest bloodwork.
As of today (had PET 6/28/21) my hair is still ok. So sorry you have gone through so much …again, thank you for sharing and making me feel I am not alone with this unique situation.
Wishing you health & resolve. Please keep me posted with your journey.